Smartwalker...here we come

So tomorrow is the big day and we go to UCP to get Amelia fitted for her Smartwalker. She's also seeing the gentleman who fitted her for her braces, the Physiatrist, Dr. Evangalista AKA Dr. E and the rest of the crew over there. We're also going over to the lending library to see if we can borrow a piece of equipment called a "creeper" which helps facilitate crawling without breaking your back. At the present time, when we do crawling, it's me bending over Amelia, holding her trunk up and moving her arms and legs across the playmat. This would be a frame on wheels that she gets strapped into and would give her the support she needs to crawl independently. Sort of like the walker, but in quadruped. It's all very exciting for us. I feel like we're going to Disneyland with her tomorrow...in a sense, it will be as exciting for her as being on a roller coaster because walking and crawling are sensations she's never really experienced in a solid way.

So, we're still having our nurse drama. We have a Wednesday nurse, a Saturday nite nurse (if we want to go out) and another nurse who will be filling in some weekdays, so overall, it's shaping up slowly. Key word: SLOWLY.

We finally got the paperwork approved for the new PT and she came over last Thursday for the first time. She was working awkwardly with Amelia, looked up at me and said "Amelia is SEVERELY hypotonic. Wow, I hope she can walk one day! I really do!". That was it for me. I waited until she left and then burst into tears. How can people be so stupid and insensitive? Saying things with no filter. I am fully aware of my daughter's challenges and I don't need a stranger coming into my home and blurting out whatever comes into her head as it comes into it!!!!!! Give me a break. I called my Service Coordinator and told her what happened. She blasted off a nasty email to the head of the PT's agency. Well, I got a call from him the following morning, apologizing for the unprofessional and clumsy comment. We have since replaced her with my friend, Carrie's suggestion of a PT she knows from her days with this particular agency. I spoke with him this evening. He's very, very busy and doesn't usually work in our neighborhood (therapists work by neighborhoods so they aren't running around in circles all day, on subways and buses and such) but is going to try and work out his schedule to accommodate Amelia's mandate of 4(days)x30(minutes)/week. Keep your fingers crossed for us.

And lastly, next Thursday, our little angel turns 2. I can't believe it. She is such a joy and brings Nestor and I so much happiness. Poor little thing is getting her 2 yr. molars and miserable!!!!! She's had a low grade fever for the past couple days, so we just have her on motrin and tylenol around the clock.

On a side note...It looks like Nestor will be working on the last episode of "Law and Order" for this season. We're rooting for the writer's strike to end soon...but it doesn't look good! It also looks like he may end up in LA in mid Feb. for a stage thing, which would allow him to be out there for the new movies (which were written before the strike) which are going into production now. Party time for the girls!!!!

Goodnight, sleep tight...

Elvis and Blackie, 1/1/06

This blog is dedicated to our amazing girl, but I wanted to dedicate this entry to my "first" little responsibility, Elvis. He was my faithful companion for 10 years -- a loyal, spunky, sweet and very handsome Cairn Terrier. He's been with my parents for the past 2 years in Baltimore, since Amelia. Beyond the obvious difficulties of having a special needs baby come into your life, add living in Manhattan where you have to take your dog for walks and having a husband who can get a job out of nowhere (and we're praying for that to happen any day now!) and have to fly off to some exotic location for however many months to shoot....not so great to add a dog into that mix.

We had to put down Nestor's faithful companion, Blackie the Yellow Lab, when we returned with Amelia from LA, almost two years ago, which was a heartbreak. And Elvis, who was in good health then, stayed with my folks...and trust me...he did very well down there. Big house, big yard, lots of cozy cuddles and table scraps.

Not too long ago my folks, who hadn't wanted to upset me, informed me that Elvis had diabetes and was getting insulin shots with meals now. Soon after, he lost his sight, but was still gettin on, gettin on. Last week, just after our visit, he started going downhill a little, my Mom starting cooking soup and such for him because the vet said he was dehydrated and his kidneys were failing. He started throwing up a lot after he ate...anyway, my Mom called this morning to tell me they were taking him to the vet to have him put to sleep. This morning when my Dad came downstairs Elvis had made a mess. He took the little guy outside, when they came in he had a seizure and went comatose.

Sadly, I feel like I said goodbye to my little friend two years ago. I have been so wrapped up with Amelia and even when I would come in to visit, I barely had time to get down onto the floor and play with him. But he always responded to me, never held a grudge. Even when he went blind, his ears would perk up, his tongue and tail would wag when he would hear me...that's what our pets do, I guess -- give us unconditional love. The last goodbye I gave him was not fitting for a last goodbye.

I am so sad. Losing Elvis is losing one of the last links to my single life. Before I was Amelia's Mom, or Nestor's wife. When I was Debbie Ross. A young, hopeful, bright ingenue, who wanted to conquer the stage and screen. Elvis and I were great roomates. I lived in a floor thru above the infamous Elaine's Restaurant on the upper east side, with a loooong hallway, which he used as a raceway -- back and forth. We had lots of parks nearby, single friends (and sister) with dogs and a neighborhood who knew and loved him -- even Elaine used to ask me to bring Elvis down to see her. He used to get me out of the house on those beautiful weekend days, that many New Yorkers will just ignore and stay in bed. He also got me out of several boring dates when I claimed I had to get home because my dog needs to be walked. Elvis was a little guy, 26-28lbs, and was a little skittish because he always wanted to be right by you, which meant he would get stepped on unless he jumped out of the way, but he was always up for any adventure.

I love my family. I love being Mrs. Serrano and Amelia's Mommy. I have wonderful memories of yesterdays and am very lucky for the life I have led thus far. Those that have passed in and out of my life have left their mark...some deeper than others.

Still in MD

This is an old photo...from last spring.
Amelia's first haircut, including Amelia (pudgy stage),
Mommy, Bubbie, Aunt Jackie and big cousin, Ezra.
Too precious to keep to myself!

Amelia and Maya, Thanksgiving 2007

We've been here since Thursday. We went to our friends', Shawn, Donna and Darmia for Christmas Eve and it was really lovely. Amelia was a true people magnet. There must have been at least 3-4 people around her at all times thru the nite. What a fun time. Spike came with us and it was great having him there.

Tuesday we went to Evelyn and Carlo's. Nestor's mom, Regina was in a great mood. Dancing and singing to Amelia all afternoon. Really terrific. For those of you who don't know, Regina has Alzheimer's and it's always a crap shoot to see how she is that particular day. We had a perfect day with the family.

Wednesday we went up to the house and spent the night. We saw Titi Terry and Uncle Artie while we were up there. It was freezing when we got there, but by late afternoon it had warmed up. Don't worry, we had the girl all bundled up in an extra heavy sweatsuit. Poor little Amelia...she rolls with the punches!

We left first thing Thursday morning and headed back to the city for a VERY important lunch date. We met Spike and his new squeeze, Christina. She is everything we could want for Spike. Sweet (so similar to Spike, very quiet), smart (double major: Anthropology and Asian Studies) and beautiful (exotic -- Greek and Romanian). We were so happy to finally meet her and she was very forgiving when Amelia kept stealing her menu from her. She very reasonably gave it up and shared Spike's menu! After lunch, Nestor dropped "the kids" off in Chinatown so they could go exploring the city and work their way thru Little Italy, up thru Soho and on up to Chelsea Piers to ice skate and go bowling. Ahhh, to be young with no responsibilities.

We packed up and left for Balto later that day and made it here in only 4 1/2 hrs and 2 Disney movies! (usually it takes 3 hrs.) And we've been here ever since. I'm very happy to report that my Mom, sis and I went shopping today and I landed my first pair of jeans, that look relatively cute, in 2 years. The best is the memory I will have for the rest of my life of my hilarious mother...2 babies (Amelia and her 6 month old cousin, Maya), 2 big strollers and a big mirror in the dressing room area at Chico's -- my mother pulling every song and rhyme she knows out of her hat...singing -- loudly, dancing and making a very big spectacle of herself, to keep the girls amused while Jackie and I tried on clothes with our poor, stretched-out-of-shape bodies. I walked out at one point and my Mom had pulled her scarf off and was playing peek-a-boo. OMG!!!! Soooo funny! Only a Bubbie/Mommy would make such an ass of herself in a public place for a smile and giggle.

We'll be heading to NJ for New Year's to be at Evelyn and Carlo's with Regina. Eventually we'll be back in the city and then Amelia will be out of this big ol vacation she's been having and have to get back to work. This little party's almost over! It has been luxurious tho...no therapy schedules to adhere to. Just us. I really love that.

HAPPY NEW YEAR'S EVERYBODY. HERE'S TO A HAPPY AND HEALTHY NEW YEAR WITH LOTS OF WONDERFUL SURPRISES AND ACHIEVEMENTS!!!!

Merry, Merry!

I know, I know -- not my holiday. But I married into it soooooo....I get to get excited too! Nothing like Evelyn's Pernil(roast pork), arroz y condules (rice and beans), plantains and pastelillo (beef pie). YUM! I'm making banana pudding for dessert (Magnolia Bakery's recipe).

Anyway, rewind to Friday. Amelia was still not doing so well, she still sounded so congested, so I called the Pediatrician and told her we were coming over. Friday would have been her last day on the Zithromax and I wasn't satisfied. The Doc listened to her and agreed that she needed a new antibiotic (Augmentin 10 days) and prednisone (steroid 5 days). Amelia always does great on the steroids -- they just make her a little zany and hyper. She hasn't been too bad this time though. Big thing is that her breathing sounds clearer and she seems much more comfortable. I've actually slept the past couple nights -- a Christmas Miracle!!!!

So today and yesterday we've been hanging low. Just staying in and catching up on everything. Tomorrow we'll be going out in the afternoon to our friend's - Donna, Shawn and Darmia's so we wanted Amelia to rest up as much as possible.

That's the latest and greatest from us. Have a wonderful holiday!!!!

When did it become okay...

...to call a family with a handicapped child -- with hypotonia, CP and global developmental delays, who is medically fragile and depends on therapists with very specific qualifications -- and tell them that you, their Physical Therapist, are not coming to their house again? When did it become okay to to tell me that you'll come -- because I told you that it was unethical and unconscionable for you to call me on the day of an appt and just tell me you're never coming back to work with my little girl -- so you tell me you'll do the appt that day, then never show up and not call? I am furious. How dare someone do that? It's terrible when anyone does it, but for someone who has been working with you for months...someone who sits in your living room holding your child and says that "Amelia needs me. I won't leave her until we're skipping around the playground together." When does Amelia get a f*@#$!g break already? I know that Merna (PT) was opposed to us getting her a walker...but she has been opposed to every piece of adaptive equipment we've gotten for her -- so this is just another day at the office. The PT at UCP is totally supportive of this walker for her, feels it is appropriate for her at this stage (she was weight bearing and weight shifting when we put her into this walker at the UCP facility) and she deals with these things on an hourly basis. Merna is not based at a center like UCP and has very little knowledge of this particular walker. I showed it to her online when she came in on Monday and explained in a very conversational way that we feel, as Amelia's parents, that this is the right move for her. When she called to tell me she wouldn't be back...she told me that it was because her private clinic work is too much for her and she has to drop her homecare cases -- she absolutely denied that it had anything to do with the walker. This may be...but isn't it curious that it comes at such a pivotal time and sooooo sudden. I would respect her if she would actually fess up -- what a coward. She couldn't even face me again. And we've had therapists leave before. There's the ethical way to do it...and there's Merna's way. A professional would show to their appt with you and explain that they have other commitments and they will stay with the case until the service coordinator can find someone to replace them.

Poor little thing has been sick since Sunday. I was sick all Saturday. We all had our flu shots, but it doesn't seem to have stopped this fluey thing that has invaded my little girls' little defenseless body and won't go away. She's on Zithromax again, but it's not helping which means it must be viral. Uchhhh -- up all night and only the relief of one nurse yesterday -- who, by the way, was terrific and we're very excited to be having her with us on Wednesdays.

Since switching nursing agencies, the nurse yesterday, Rachel, has been our one and only. It's been a slow start but I like the idea of having several nurses that cover different days, rather than one nurse who is completely married to just your case. This way we have backups and flexibility.

We'll be spending x-mas eve with our friends Donna, Shawn and Miss Darmia Hope, then off to NJ for x-mas day. Hopefully we'll be meeting Spike's new girlfriend, Christina, on Wednesday and then heading down to Baltimore for a few days. We'll find ourselves back in NJ for new year's. OY, what a trek! I know after the new year we'll be closer to normal again...whatever the hell that is!!!

Happy Everything to everyone and here's to a HEALTHY and happy new year! Or as Nestor's Mom says, "Salud, dinero y amor!" (Health, money and love)

Nurse Shmurse

This has been a very bizarre week. After welcoming our nurse, Denise, back from her personal leave last week, she failed to show up to work on Monday morning. No call to me or the agency. Finally, Tuesday morning the agency heard from her. I was told that she would not be returning to our case. she informed them that our case is more of a babysitting case and she felt like she wasn't being properly utilized here. WTF!!!!!! Because Amelia isn't hooked up to ten machines and on oxygen or worse. What does she need? A critical care baby to feel validated? Amelia is, thankfully, in the rehabilitation stage. Her needs are still great, but unless she's sick (and believe me it's scary) she's not as fragile as she once was -- but a babysitting case? I wish. I wish I could just drop her off at babysitting at the gym or call someone to come and babysit her so Nestor and I can go out to dinner. I wish that were my life, this is not what we signed up for and how dare someone diminish what we do here everyday and night. I am in constant motion (as every Mom is) from morning to night -- but my motion is washing syringes and tubing. Making sure everything is clean washed out for the day. Whether it be a suctioning unit, feeding pump, feeding bag, restocking medical supplies or medications. Dealing with a very heavy therapy schedule, scheduling clinic and dr. appts. Worrying about things like that the letter to Con Ed is up to date so if there's a power outage they know we have a medically fragile baby with equipment that runs on electricity. Carrying around a 25lb. , 34 1/2 inch baby who doesn't help you lift her -- doesn't crawl, doesn't walk. We have no one here to help us -- JUST US -- SO GIVE US A BREAK! To leave us high and dry like that. Have the decency and professionalism to call and tell us why you're really not coming back. I know she had lots of personal things going on and I know people's lives and families come first -- I get all that -- but be a human being about it and communicate what's really going on. She waved goodbye to us Friday night and said "see you Monday."

So we've now left our nursing agency, Maxim and are now working with a new agency called Family Pediatric Homecare. I'm really looking forward to having some new nurses and new people to work with. I wish Maxim had been more up front with us and told us that they really have limited Pediatric nursing available, whereas this new agency ONLY does peds nursing. My friend Carrie uses them with her little boy and has been very satisfied, so everyone keep their fingers crossed for us.

So on another front, Nestor and I have been looking into the idea of getting a pediatric walker for Amelia. Our PT, Merna is vehemently against it -- she says she's not ready for it, but she was also against the stander and that's been one of the most important pieces of equipment we've gotten for our girl. So, we decided to investigate further and contacted the wonderful PT, Michelle at UCP NYC. She told us to come in and we could play around with the walkers she has there at the center. So that's what we did this morning. Success! Michelle said she is absolutely ready for a walker called "Smartwalker." Click the address below to view the walker and see video:

http://www.aodmobility.com/SMART/smart.html

It's brand new and in defense of Merna, Michelle said that Merna has probably never even seen on of these yet they're so new. Anyway, it's very exciting! So she's going to call us and let us know when the next Smartwalker clinic will be at UCP, we go there, they fit her, and then we order it thru Medicaid. It's about 2ft by 2ft with a seperate full body orthotic that you strap her into. It goes from under her arms to shoes that hook into the metal bar that extends to the floor. There's nothing in front of her -- no bars to hold onto -- just open space. It's hard to describe -- but we're really excited about it.

Also, today Art and Terry (Uncle Artie and Titi Terry) came down from upstate and spent the day and evening with us. It was great to see them, we've barely been up to the house since it turned cold, so it had been awhile. We had a wonderful time and Amelia was adorable as she snuggled into Uncle Artie and giggled at his shenanigans. And Titi and I gave Miss A a warm, lavender fresh bubble bath which she thoroughly enjoyed, while the guys went out and got pizza. What a fun night.

Not much planned for the weekend, but Monday we meet our new nurse and nursing supervisor. We also have our new OT coming Monday -- so lots of big stuff happening next week -- we'll probably just hang in (as always -- but I love it!!!). I DVRed "It's A Wonderful Life" so that will definitely be on the To Do list.

Another lazzzzy Sunday!

Amelia had a terrific week. Our nurse, Denise is back and we are so over the moon to have her back. I took advantage and did lots of fun things -- yoga, a movie (the last movie I saw in a theater was "Capote" last year), lunch and cooking. So nice to get out a little for some "me" time. (I saw "Enchanted" with Veronica and we had such a great time. Adorable -- all girls should see it -- together!)

Amelia is getting stronger everyday. She is so interactive and seems to understand so much. We all make a point of speaking to her in a clear way. Explaining what we're doing, where we're going, who is at the door (ie. which therapist is on her way up), etc. She has mastered the sign for "give me" and it makes our hearts melt everytime she uses it. I'll bring over a toy and ask her if she wants it and she'll sign "give me" or when I'm giving her tastes of purees, I'll ask her if she wants more and if she does, she'll make the sign -- it not, she won't . It's quite clear. Her teacher, Lilli has been the driving force in teaching her signs and modifying them so she can actually do them. It's amazing really. Our latest thing is that I growl at her and she laughs and squeals at it. Also, a heart-melting thing. It's just so incredible to see how communicative she is and that she really gets it, you know? One of our biggest fears has always been, and still continues to be, how she will react and respond to the world. It's still too soon to know completely, but we're very encouraged by her day to day -- hour to hour -- gains.

Nestor had oral surgery on Friday so we knew we weren't doing much this weekend. As it turns out, he felt pretty good and wasn't horribly swollen on Saturday so the three of us trekked to NJ to see his mom at his sis's house. It was a great visit and she and Carlo made a stupendous meatloaf -- so sweet of them -- knowing Nestor would be sore. He ate a lot of it -- actually so did I. YUM! Today Nestor woke up with the most swelling he's had so far(we knew day 3 would be the worst). Not terrible, but he wasn't going to venture out so we vegged out. I ran to the store in the AM while Nestor and Amelia chilled. Then, we watched a documentary on HBO, ate, napped and now I'm getting ready to turn in for the nite. What a tough life, right? Amelia was not interested in going to sleep and just finally fell off around 10PM.

This is our OT's last week with us and then she's off indefinitely for maternity leave. It's very exciting but we're sad to loose her. She's the only one who's been with us since we arrived here from LA. We have a new therapist in place, but Amelia's increases came thru last week and now we're searching for yet another OT to split the therapy with (the mandate is 5 days a week for 30 minutes -- a lot for most therapists to fit into their schedules, so normally you'll split it up so one will do 2 days and another will do 3 days -- very complicated) -- so we'll see how all of that goes. Wish us luck!